Notice for participants who consented to be part of the Registry before January 2013
Linkage to the data held by the Health and Social Care Information Centre
To be part of the Registry and its studies, the participants need to give their consent that
information from their medical records can be extracted and analysed. The data in the medical
records are usually sufficient but on some occasions relevant data may be missing if participants
received care in other NHS Trusts which are not part of the Registry’s network of centres.
Participants also need to be followed up over time to find out if they have developed any comorbid
conditions or had ITP treatment elsewhere, even if they are no longer at the centre where they were
initially registered. With a determination to capture these important data and therefore improve
data completeness, the Registry applied to the Health and Social Care Information Centre to use
their Data Linkage Service. This means that the Registry will be able to obtain Hospital Episodes
Statistics about their interaction with the NHS, such as inpatient admissions, outpatient clinics, A&E
visits and Critical Care admissions. The Registry does collect all this data through its data collection
activities but required the assistance of the HSCIC to ensure that all is being captured.
In December 2012, the application was made for the Data Linkage Service. While the HSCIC was
considering the application, the Registry’s consent form was being updated to ensure that new
participants gave their consent that their data can be obtained from the HSCIC. The new consent
form was approved by the National Research Ethic Service in January 2013 and used from then on.
The previous consent form did request for participants’ data to be extracted from their medical
records but the Confidentiality Advisory Group (CAG) had to approve if this data collection can be
extended to the data managed by the HSCIC. An application under section 251 was made and
approval was granted by CAG. Data from HSCIC was then received in January 2014. Participants who
were enrolled on the previous consent forms had to be given the opportunity to object to their data
being received by the Registry from the HSCIC.
If you are participant who was enrolled prior to January 2013 and you do not wish the Registry to
obtain your data from the HSCIC please write to us at
Data Manager/Study Coordinator
Room 201
Pharmacy and Pathology Building
80 Newark Street
London E1 2ES